Max's buddy, Ben Russo, is having his choanal atresia repaired tomorrow morning. His previous surgeries have failed, so the doctors are trying an alternative route through the mouth.
They will also be scoping his airway because Ben will require some reconstruction in the near future. He had damage due to his lengthy intubation.
Please keep sweet Ben and his family in your thoughts and prayers.
Thursday, September 28, 2006
OUR HOTEL ADVENTURE
Hmmm...how can we sum up our hotel adventure? It was a challenge, that's for sure!
Mom had A LOT of equipment to pack up and then bring in from the car. Oxygen tanks, feeding pump and pole, monitor, supplies, etc. and then all the usual mom/baby stuff. The problem was that she couldn't hold me and carry things in. She tried, that didn't work! (I don't hang on like a normal kiddo so Mom has to be extra careful with me.)
Then I was insistent all night on taking my cannula out of my nose. If I wasn't desatting because of that, my portable O2 tank was empty. As you can see, I kept my mom up all night long. But that earned her a Starbucks latte in the morning and she was happy with that!
All in all, we managed...and we can check our first hotel stay off the "to do" list. :)
This is my "mini hospital" in our hotel.
I am sooo wiped out! It was a VERY long day!
Mom had A LOT of equipment to pack up and then bring in from the car. Oxygen tanks, feeding pump and pole, monitor, supplies, etc. and then all the usual mom/baby stuff. The problem was that she couldn't hold me and carry things in. She tried, that didn't work! (I don't hang on like a normal kiddo so Mom has to be extra careful with me.)
Then I was insistent all night on taking my cannula out of my nose. If I wasn't desatting because of that, my portable O2 tank was empty. As you can see, I kept my mom up all night long. But that earned her a Starbucks latte in the morning and she was happy with that!
All in all, we managed...and we can check our first hotel stay off the "to do" list. :)
This is my "mini hospital" in our hotel.
I am sooo wiped out! It was a VERY long day!
ANOTHER SPECIALTY JOINS THE TEAM
Yep, another specialist has joined my team. I think that might be #15 or so. Yikes, quite a large team I have.
The new specialty is urology. During my endocrinology clinic this week, they decided (after a gazillion residents "checked" me out) that my undescended testicle will need surgery. Urology is the team who will handle that. Next week I will get an ultrasound to confirm their diagnosis and then we will proceed forward. Surgery would probably happen in the next two months.
Other endocrine issues will not be evident for several more years. And the major issues will not be prevalent until puberty time. Some CHARGErs don't experience puberty naturally and therefore it must be decided if they should/should not be assisted with hormones. There is much debate on this issue depending on the cognitive level/medical status of the child.
As far as growth hormone, we should know in approximately one year if I need it. But for now, they are satisfied with my growth. I definitely am on the small side (still not on the chart) and they believe I always will be. Small stature though is part of CHARGE, so that news was not a shock. The important part is that I am making steady progress!
The new specialty is urology. During my endocrinology clinic this week, they decided (after a gazillion residents "checked" me out) that my undescended testicle will need surgery. Urology is the team who will handle that. Next week I will get an ultrasound to confirm their diagnosis and then we will proceed forward. Surgery would probably happen in the next two months.
Other endocrine issues will not be evident for several more years. And the major issues will not be prevalent until puberty time. Some CHARGErs don't experience puberty naturally and therefore it must be decided if they should/should not be assisted with hormones. There is much debate on this issue depending on the cognitive level/medical status of the child.
As far as growth hormone, we should know in approximately one year if I need it. But for now, they are satisfied with my growth. I definitely am on the small side (still not on the chart) and they believe I always will be. Small stature though is part of CHARGE, so that news was not a shock. The important part is that I am making steady progress!
THE SWALLOW STUDY
The first appointment of the day was my swallow study.
As most of you know, I receive 100% of my nutrition through my Gtube that feeds directly into my stomach. Many of us kiddos with CHARGE have a lot of difficulties with swallowing, oral sensitivity, etc. So it is a constant battle for us to overcome these problems. With the help of our parents, super therapists and LOTS and LOTS of work, some CHARGErs do get their feeding tubes removed within 3-5 years or so. Others much longer and others even longer. We are *hoping* that I am in the short term category, but with my medical history we may be keeping it for slightly longer. Who knows!?! In the meantime, we are trying, trying, trying to make progress...but man, it is very slow! And Mom gets a little sad about it sometimes. She keeps telling me how wonderful it will be to share meals and special treats together someday...sounds fun!
So we keep trying...even when it seems like nothing is working. Some days I will let Mom give me food (for tastes) and swallowing attempts, and other days I want nothing to do with it at all. We are getting a bit anxious about this issue and want to move forward more aggressively.
So to make sure we were safe for increasing our oral attempts, we scheduled this swallow study. This is my second study. The first one I did "ok" but aspirated some with the pureed barium/baby food.
This time I did much better with the pureed foods. I only aspirated once and that is when my neck was positioned a different way. My swallow is still "uncoordinated," which means I take my time swallowing and it requires more effort.
I immediately failed the liquid test but that's ok. Once I get the hang of pureed, we will start working on liquid. And quite honestly, we have a way to go to reach that level!
So all in all, the results were fairly positive. We have been given the "go ahead" with doing more oral attempts, but Mom is supposed to monitor my respiratory status very, very closely. This will help us know if I am aspirating or not.
Last night we went and bought all kinds of pudding, yogurt and applesauce. Mom was so excited to buy something other than baby food for me! These consistencies are actually supposed to be better for me because they are slightly thicker. However our first attempt today was not good. I wanted absolutely nothing to do with the applesauce. Oh well...there is always tomorrow! :)
Here I am during my test! I liked spitting a lot of the barium back out at Mommy!!! I kept giving raspberries in the middle of the test. :)
Here's the machine, crazy huh?
As most of you know, I receive 100% of my nutrition through my Gtube that feeds directly into my stomach. Many of us kiddos with CHARGE have a lot of difficulties with swallowing, oral sensitivity, etc. So it is a constant battle for us to overcome these problems. With the help of our parents, super therapists and LOTS and LOTS of work, some CHARGErs do get their feeding tubes removed within 3-5 years or so. Others much longer and others even longer. We are *hoping* that I am in the short term category, but with my medical history we may be keeping it for slightly longer. Who knows!?! In the meantime, we are trying, trying, trying to make progress...but man, it is very slow! And Mom gets a little sad about it sometimes. She keeps telling me how wonderful it will be to share meals and special treats together someday...sounds fun!
So we keep trying...even when it seems like nothing is working. Some days I will let Mom give me food (for tastes) and swallowing attempts, and other days I want nothing to do with it at all. We are getting a bit anxious about this issue and want to move forward more aggressively.
So to make sure we were safe for increasing our oral attempts, we scheduled this swallow study. This is my second study. The first one I did "ok" but aspirated some with the pureed barium/baby food.
This time I did much better with the pureed foods. I only aspirated once and that is when my neck was positioned a different way. My swallow is still "uncoordinated," which means I take my time swallowing and it requires more effort.
I immediately failed the liquid test but that's ok. Once I get the hang of pureed, we will start working on liquid. And quite honestly, we have a way to go to reach that level!
So all in all, the results were fairly positive. We have been given the "go ahead" with doing more oral attempts, but Mom is supposed to monitor my respiratory status very, very closely. This will help us know if I am aspirating or not.
Last night we went and bought all kinds of pudding, yogurt and applesauce. Mom was so excited to buy something other than baby food for me! These consistencies are actually supposed to be better for me because they are slightly thicker. However our first attempt today was not good. I wanted absolutely nothing to do with the applesauce. Oh well...there is always tomorrow! :)
Here I am during my test! I liked spitting a lot of the barium back out at Mommy!!! I kept giving raspberries in the middle of the test. :)
Here's the machine, crazy huh?
Tuesday, September 26, 2006
THE TORTURE DEVICE
Every time Max's lungs worry our doctors, we must get a xray of his poor lil' lungs. It is never, ever easy. They put him in a torture device which holds him still for a good "capture" of the lungs. I always forget to bring my camera, but Cedie's mom did not. Check this out (link below). Understand why I always dread the much too often lung xray?
Cedie's Blog: http://cedielynn.blogspot.com/
Look at the "9/24 Day at the ER" entry
Cedie's Blog: http://cedielynn.blogspot.com/
Look at the "9/24 Day at the ER" entry
Monday, September 25, 2006
ADDING CHEER TO THE HOSPITAL
Mom thought it would be nice to make some Halloween signs for the patients at Children's Hospital. We always loved having decorations to brighten up and personalize my hospital room, so we thought The Mighty Maxwell Guild could do the same for others! :) Plus this was a good way for her to unwind and relax...very needed these days!
Two of our friends came to help with the signs, and they even cleaned our house while Mommy was busy with me.
Thanks Sarah and Alison! :)
I was a really big help.
And so was Shakespeare.
We head to Seattle tomorrow morning and have a full day of appointments. We are spending the night because we have even more the next day. I have never stayed in a hotel before...this should be interesting! LOTS of equipment to load up, but it should be a fun adventure. :)
Two of our friends came to help with the signs, and they even cleaned our house while Mommy was busy with me.
Thanks Sarah and Alison! :)
I was a really big help.
And so was Shakespeare. We head to Seattle tomorrow morning and have a full day of appointments. We are spending the night because we have even more the next day. I have never stayed in a hotel before...this should be interesting! LOTS of equipment to load up, but it should be a fun adventure. :)
